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I mentioned a couple of weeks ago in a thread about exercise and stretching that I was starting to go to the gym again after a two year lay off due to this lovely disease – SD. Anyway I started back last week and it really feels great. I am still going at it easy, usually working either lower body or upper body but not both. I found a couple of my old work out sheets in the file and noted that I am moving more weight than when I had to stop, so that is good. Some of the numbers are that not far behind what I was doing the year before when the SD had not affected me too much yet. Although that year I did note that my upper body strength was off. What I have noticed is that by working out the tendons in my legs are much less tight and I have not experienced much pain by resuming the work outs. Just some general muscle soreness from working muscles that I have not used lately. Also the steam room and the hot tub after are REALLY nice! So if you can at least get out and stretch. Keep moving.
YEAH! I am so glad to hear that you have rounded yet another corner in your recovery. Don't forget, SURFING! Pump those weights and soon you will be up to catching a big wave. LOL
Cheryl
Thanks Cheryl 😀 – I don't know if I'll ever get back to surfing. Interestingly thats where I first noticed the waning upper body strength. I just could not paddle like before. I was pretty much a hack at surfing anyway but maybe someday. I have been able to resume a lot of other activities so I am happy with that. It's all good!
Jeff, that is such great news! I started back to the gym, too, this past week. I don't know about you, but it feels like such a blessing to finally be able to do the things I begrudged doing before, like schlepping to the gym, but really missed when I couldn't! Ironic, eh? Just walking without constant pain and being able to stand to cook for the family without having to sit down every few mins is like a miracle. I actually stop in wonder when I find myself doing something I haven't been able to do for so long…just to take the moment in and appreciate it.
So, I am joining in your joy at making a return to the gym! Way to go!!!! 😀
Peace, Maz
Maz it is so true – just being able to do normal things again. I had to stop going to the gym two years ago because in addition to the SD I found out later I was suffering from watermelon stomach and was so anemic that I really could not get down the stairs to the locker room. I would get what I called “dead leg” at the time, my legs just did not want to work and I was winded. The last time I went I got down to the locker room, had to rest and then just went back up the stairs and home. Now I go and just walk down the stairs, so simple. Makes me smile!
Jeff,
Good job on the weights and the gym. It is very important as you know to keep the muscles, tendons, connective tissue and joints working.
I have continued to lift and stretch, typically 3 days a week. If nothing more it provides me a gauge of where I'm at during any given day or week. Today I felt 50% stronger in almost every muscle group. However, my knees have been too tender (why???) to allow me to properly use the leg extension machine (quads). My shoulders are coming back to life, but I have a long way to go there.
Lately it's been amazing to stretch my groin muscles by lying on my back on a massage table and hanging a leg over the side while stretching out my arms. My groin and abs are so tight I have to be very careful not to rip and tear the groin. But boy does this stretching help. Hopefully the day will come soon when I can do this stretch knowing that the scleroderma is gone.
As you know, swimming is tremendous for stretching the body out as well, in addition to working the arms and legs a bit. I try to swim 20 mins twice a week. Until just recently, I had to slather my arms and legs with Vaseline so the chlorine wouldn't hurt my rough scleroderma areas.
Forgive me for sounding like I'm gloating, but I consider my scleroderma as an opponent, and I continue to try awfully hard to beat it.
Although the typical person's gym workout is nothing more than a workout, for me, walking to and fro the mailbox is an athletic event. And it certainly can be discouraging, feeling so fatigued and weak and unmotivated and having to struggle to lift a few reps of a measly 10 pounds of this or that, when the guy next to you is pumping 140 pounds ruthlessly, getting a good sweat, and loving it. And you just want to say, “Hey dude, you don't realise, but it's magnitudes harder for me to lift this measly 10 pounds than it is for you to knock out your 140 pounds!”
Anyway…. I'm beating this scleroderma, it's stubborn, but I've got it running!
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Randy, I so understand where you're coming from, and admire your attitude! We are intrepid!
After my post a few weeks ago about detoxing my liver and also about weight gain, Maz suggested I get a recumbent bike for exercise. My lower back has become so painful that my short 20 min daily walks were torture, and I was frustrated by my inabililty to exercise enough to lose weight. I can't afford a decent recumbent bike, nor do I have the room for one, and a gym membership is also not in the budget right now.
Never one to give up, I searched for alternative types of exercise that would burn calories without stressing my back. I am already doing exercises to try and strengthen my back, but again, they are not calorie burning exercises and weight is a big part of the problem. I finally decided on a small pedal exerciser that you put in front of a chair, similar to a recumbent bike, but much smaller and cheaper ($30 at walmart.com) It is the perfect solution for me right now; I can move while watching tv or reading, burn more calories plus improve my circulation, which has also become a big concern for me. The pedal exerciser can also be put on a table and I can exercise my arms, and if I lock my arms it forces my back and stomach muscles to move the pedals, so I can get more of an upper body workout as well, which I need since most of the weight I have gained is upper body weight (@#* steroids!!!). Not a bad little exercise machine for $30! I know from personal experience that exercise does help arthritis, research has confirmed this also, so I'm glad that I've found a way to work out again. It's not the 3 miles I used to run every day, but it's a start.
This site has been such a great support and blessing to me; so many alternatives and solution to problems of which I would probably not consider by myself, not to mention the emotional support when I just want to give up. About 4.5-5 yrs ago I had gained 70 lbs from prednisone; with a combination of physical therapy to wean off of vicodin, reduce the prednisone, and a remission that allowed me to exercise regularly, I lost all the weight. However, over the past 2 years my symptoms have gradually worsened, and I have had to increase the prednisone; as the steroid dose has increased, so has the weight. I've now gained back all 70 lbs. VERY, very depressing- but, thanks to your suggestions, I have a plan to help reduce the weight.
It's been almost 2 months since I started back on AP, and I'm experiencing some herx reaction; really bad headaches, the lower back pain the worst it has ever been, and severe fatigue. It's tough to think about exercise right now, but even more difficult to get on the scale. This little pedaler is a great solution for me, it doesn't aggravate the painful joints or muscles, and I can work longer and burn more calories. Thanks to all of you for your suggestions and help. Hopefully we can all stick to our new exercise routines and get REALLY BUFF:dude::dude::dude:! Yeah, baby!!!
[user=11]linda[/user] wrote:
Randy, I so understand where you're coming from, and admire your attitude! We I finally decided on a small pedal exerciser that you put in front of a chair, similar to a recumbent bike, but much smaller and cheaper ($30 at walmart.com)
Linda, what a great idea! I'm going to invest in one, too! Thanks for sharing this great find. 😀 I didn't know those gadgets existed, but certainly a nice alternative to a more expensive recumbant bike.
Peace, Maz
Way to go, Jeff!!! So glad to hear about your amazing improvement!!! I am looking forward to the day when I can jump into the swimming pool to do some laps like I used to.
Thanks for sharing your story.
JBYour post makes me want to cry! I have consistently exercised since college (that was 26 years ago!) and have not been able to since January of this year. On good days I may cycle with the kids or use my stationary bike inside but my workout is really wimpy now. If I can get up a sweat I am excited. I know it is important to keep moving but there are days that I just am so fatigued and I can barely make it up a few flight of stairs so I am so excited to hear you are feeling well enough to get back into it. I look forward to when I feel like I can take my long walks again without my feet feeling like they are on fire. I need to be thankful for the days I do feel better and have hope for getting back into the exercise routine again like you have. It WILL come in time and guess I need to listen to my body and be patient. I really used exercise for stress release and control of depression though too and it has been hard to find a good substitute. If anyone has suggetions I would love them! Congratulations Jeff and I hope I will some day soon be posting similar success.
Alice (Diagnosed with CREST April 08 and started AP July 08')
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
Hi Aggie,
I'm so sorry to hear of your diagnosis of CREST, I have an aunt with the same disease. She gets the burning in her feet, too. I was wondering if you have tried Lyrica, it works really well on the burning pain that people get from neuropathy and fibromayalgia. I get burning pain in my shoulders and Lyrica works wonders for it. The only problem is that if taken in high doses it can cause weight gain, but if it can get rid of the pain and exercise, it sort of balances out. It has a mood lifting effect, but it is not an anti-depressant. Lidoderm patches also work very well by numbing the area that hurts.
You're correct when you say you staved off depression by exercising, it's been shown that exercise increases our levels of serotonin. It makes sense that you miss how you felt when exercising. I hope you can get back into it somehow. Best wishes,
linda
Wow, Jeff, that is one inspiring story, and I could not be happier for you. I'm not there yet, but my goal is to rejoin my tennis team maybe in a year or so. Yeah, I know, walking up stairs comes first.
Randy, you amaze me. Your kick-ass attitude will triumph. I don't worry so much about people like you that are battling SD because you have such strong conviction. Try to ride this out — it will get better.
Linda, you also amaze and impress me. You always seem to keep your head above water and know when you need to make adjustments. You also will triumph. I share in your frustration with the weight thing. It's asking a lot for a totally fatigued aching body to hit the gym. I figure any exercise is better than no exercise, so just do what you can and try to stay positive.
Thanks for your suggestion and reply Linda. I am afraid of those kinds of drugs I guess and have been able to deal with it. Many days it is totally gone so on the days the burning pain is there, I can get down. Need to keep moving though and hope it does get better and better, albeit slow. God bless all the angels on the board and I pray for all of you.
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
Thanks for your suggestion and reply Linda. I am afraid of those kinds of drugs I guess and have been able to deal with it. Many days it is totally gone so on the days the burning pain is there, I can get down. Need to keep moving though and hope it does get better and better, albeit slow. God bless all the angels on the board and I pray for all of you.
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
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